“This shouldn’t be the case in 2017”: A call for more research on transgender health

There's a pressing need for more research into transgender health issues. That was the argument eloquently laid out at Stanford Medicine X talk this weekend by ePatient Charlie Blotner.

As Blotner told attendees, a 2015 survey (.pdf) from the National Center for Transgender Equality found that 23 percent of transgender patients delay or don't seek care because of fear of discrimination. Of those transgender patients that do seek care, 24 percent end up educating their providers about issues of transgender health. "I’m all for patient empowerment," said Blotner. But, "I think that this is patient knowledge being relied on as expert instead of providers and researchers taking the time to learn about it and invest in trans health in general.”

"Trans patients have been filling in the gaps of health care for a while now, but at what cost?" Blotner continued. "We’ve had to accept care from people that aren’t necessarily trained to treat us. In 2017 that really shouldn’t be the case.”

Once a week, Blotner gives himself a shot of testosterone along with his morning coffee. It's part of his medical transition; a process that for him, is "incredibly gender and life affirming." While not all transgender people undergo medical transition, it's incredibly important to Blotner and others -- yet there is hardly any research on this topic. (He pointed out there have been only several dozen research papers on gender reassignment surgery that included health outcomes.)

"What happens when trans people aren’t involved in the research about our own community is that we end up having research on areas of curiosity instead of areas that are actually of interest and are most important to our community," he said. "So I have research about what my nipples look like, but I don’t have research about what my liver is going to be like when I’m 80 because of these weekly shots of testosterone."

Blotner also called for more input on what research needs to be conducted from the patients to whom it matters most. “No one knows trans people better than trans people," explained Blotner. He urged researchers to partner with the trans community while conducting research as well as while analyzing it. "We know the questions that the trans community wants answers to.”

The scenario many of us learned in school is that two X chromosomes make someone female, and an X and a Y chromosome make someone male. These are simplistic ways of thinking about what is scientifically very complex.